Be Your Best Advocate
In July 2013, Kristin Todd was a happily married, 32-year old nurse practitioner enjoying the 34th week of her pregnancy when she discovered a lump in her breast. Her prenatal appointments were scheduled so that she would have a chance to meet each doctor in the practice prior to her delivery, and her next appointment was with an obstetrician she had not seen before.
Upon meeting the new doctor, Kristin reported that she had found a lump in her breast, but after a physical exam, the doctor dismissed it, saying she was too young for breast cancer. The doctor also said that they would wait until after her baby was born to do any kind of diagnostic testing anyway.
As a medical professional herself, this answer didn’t sit well with Kristin. She knew this wasn’t the case. She contacted herprimaryOB-GYN in the same practice and explained her concerns. This time, her doctor agreed that further testing was warranted and scheduled her for an ultrasound and biopsy. The results came back- Kristin had invasive ductal carcinoma (ER/PR+ and HER2-).
In the weeks leading up to her delivery, Kristin had a lumpectomy and lymph node dissection. She was induced at 37-weeks and gave birth to a healthy baby boy, Logan. At only three days postpartum, Kristin had a port placed for chemotherapy and underwent her first PET scan which revealed liver and bone metastases. This was certainly not the way any new mother would want to spend the first few days with her baby.
Kristinreceivedsixrounds of chemotherapy and had her ovaries removed. After the chemotherapy, she entered NED (no evidence of disease) status for about 4 months but then experienced a recurrence in her bones during the summer of 2014. She received radiation to the spots on her rib and spine and then enjoyed NED status for another 10 months. This past fall, however, Kristin was diagnosed with another recurrence of her liver.
Kristin credits her family for helping her throughout this experience. Her father, a physician, was instrumental in helping Kristin seek out excellent medical care and expert opinions. Her mother and mother-in-law both came in from out of state to help care for baby Logan. Her sister, cousins, and friends all pitched in to help any way they could.
Today, Kristin is hopeful that her upcoming scan will show resolution of her liver metastasis, having completed four rounds ofDoxilchemotherapy. She looks to her son as her light and motivation in life. “I do believe in the power of the mind,” she states. “I have so much love and support around, along with my own positive outlook that I know I can get through most anything.”
Receiving a diagnosis of Metastatic Breast Cancer can be overwhelming. So much emotion, so much information, so many decisions- it may feel more than you can handle. But we want to help you find that inner strength and reclaim your power.
Kristin’s story provides some great examples of ways you can advocate for yourself as you navigate your way through your changing life. Let’s take a closer look at them.
Take an active role in your health care In the course of your treatment, you will often hear the term “health care team” and that may bring to mind the many physicians, nurses, and therapists that you encounter. Make sure you aren’t forgetting the most important member of that team- YOU! You need to feel confident in and comfortable with your plan of care. Don’t be afraid to ask for a second opinion or to request an explanation if there is something you don’t understand.
It’s a good idea to keep a running list of questions that you can bring with you to appointments. It’s not uncommon to forget things during the hustle and bustle of a doctor’s visit, so writing things down will help.
Kristin recommends taking a step back and re-evaluating what makes you happy, what is truly important to you. In her case, she finds that her patients bring her a lot of joy, so she has continued to work part-time. Staying physically active and meditating daily keep her focused and calm. Kristin also keeps a daily gratitude journal. “It helps to remind me that during my really down days, there is ALWAYS something I can find to be grateful for“, she states. Keep doing the things you love and surrounding yourself with those you love. You may find that it’ll help get you through each day.
Educate yourself The more educated you are about your disease, the better able you will be to take an active role. It is really important that you take the time to learn as much as you can. This will allow you to better communicate with your team and make decisions that are right for you.
There are some really great resources available to help you in this regard.
Accept Help Advocating for yourself doesn’t mean that you have to do everything on your own. Sometimes the best thing you can do for yourself is to admit that you can’t do it all. Asking for help when you need it is truly a sign of great strength.
Can your mother come help watch the kids? Great! Is your neighbor offering to make dinner for your family this week? Take her up on it!
Understand your rights and your benefits If you are a working woman, you are going to have to make some decisions regarding how you want to proceed. Some women may choose to keep working as long as possible, scheduling their appointments around their work hours, while others may opt to take short or long-term disabilities. Discuss with both your employer and your health care team what options are best for you. Make sure you understand what you are entitled to regarding benefits and payment during this time.
When it comes to health insurance, it is important to be aware of your policy and what is covered. If you have any questions regarding your coverage, don’t hesitate to contact Human Resources or the insurance company directly. With extensive medical treatment, you want to be sure you understand all deductibles, co-pays, out-of-pocket maximums. Start a file with all of your paperwork, so that you can refer to it if any questions or problems arise.
Take care of your whole self During your cancer treatment, you focus so much on your physical well-being, but you don’t want to neglect your mental and emotional needs. It is normal to experience a lot of anxiety and stress, and you may want to find someone to talk to during this time, whether a therapist, a support group or a friend.